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Parent of 17 Yr old type 1 refusing insulin

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
M

Meeshy

Member
Relationship to Diabetes
Parent of person with diabetes
I'm new to this so please bear with me. Its a very long story I'll try to keep it as short as possible. My 17 year old was diagnosed type one at the end of April. She seemed to be dealing with things OK.. About a month ago she started having regular hypos whilst in work and eventually became hypo unaware. She was given the freestyle libre which was working brilliantly but she started to have a reaction to the insulin injections and just became afraid to inject. She started to become unable to cope and walked out of her job.. She stopped engaging with the diabetic nurse and won't answer her calls. In desperation I rang a diabetic nurse at my GP who managed to speak to my daughter and was very concerned about her. She made her a 20 min appt with the GP. She wouldn't let me go with her so I just had to trust that the GP would understand and know what to do and help her. She text me after being in the appt for 6 mins and said 'that's it I'm not speaking to any of them again they can't help me' the GP basically told her - well you're just going to have to inject is that OK.. She walked out. She hasn't had insulin for around 4 days now, she won't speak to me about it, I've begged her to Inject but she just won't. She's not eating and hardly drinking. She shuts herself away in her room and has threatened to move out if I 'keep going on about it'. I've emailed the diabetic nurse at the hospital but she won't see that until Monday morning. I'm at my wits end and I feel like evrytime I try to talk to her i make everything so much worse..
Any advice is greatly appreciated...
 
I know nothing but would an insulin pump possibly persuade her to be more adherent? Also ask about freestyle libre which is a testing system that cuts down on finger pricking by I’m told 5 a day? You could ask the nurse if this might be a possibility.
Best of luck!
 
Leo said:
I know nothing but would an insulin pump possibly persuade her to be more adherent? Also ask about freestyle libre which is a testing system that cuts down on finger pricking by I’m told 5 a day? You could ask the nurse if this might be a possibility.
Best of luck!
Click to expand...
Hi there, thanks for your reply. She already has the freestyle.. She testing now but barely giving insulin. She won't engage with any medical staff at the moment..
 
NICE guidelines state that in children (not in adults) a pump would be advised when injecting is impractical or inappropriate. Your daughter is refusing treatment for those reasons and this needs to be addressed for her health and ongoing wellbeing. She’s obviously extremely anxious about this but again it’s not in her best interests to refuse treatment as you know.
Could you possibly liaise with the diabetes team on your daughters behalf? A pump would allow her to deal with the physical side of diabetes with less anxiety of testing and injecting while her mind catches up with the reality of dealing with this on a longer term basis?
 
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Leo,
I sent an email last Friday to the diabetes helpline at her hospital and they haven't even replied to me. To be completely honest I just feel so let down by all of them and I know my daughter does which is partly I think why she hs disengaged with them. They have said in the past that it has to come from her as they are treating her as an adult.. She'll be 18 soon. I feel stuck between a rock and a hard place... What you've said makes complete sense and I would love for that to happen, I just don't know how to get it to happen at the moment with her not talking to anyone or attending any appointments. I think I just have to wait and hopefully she'll come around. Meanwhile though I'm worried sick about her levels and lasting damage..
Thanks for your reply. X
 
Please call them and speak to her CNS (Clinical nurse specialist) directly as emails sometimes get missed or are not prioritised because sometimes clinical teams are busy (that is no excuse btw) but a phone call to her team should be dealt with more promptly. I think emails can be construed as not urgent and I think this situation sounds like it needs to get a solution sooner rather than later.
The thing is at the age of 17 she would still be under Paediatrics and she is not yet an adult and so they should not be treating her as an adult. Legally she is still a child. I work in paediatric pharmacy and we still have patients 20 odd years of age that we treat as we realise that popping them off to adult medicine is not necessarily right for the patient, not that I think this may be the case with your daughter but she is still not 18 yet and should be treated as such. Please make that phone call. You never know what may come of it!
 
Leo said:
Please call them and speak to her CNS (Clinical nurse specialist) directly as emails sometimes get missed or are not prioritised because sometimes clinical teams are busy (that is no excuse btw) but a phone call to her team should be dealt with more promptly. I think emails can be construed as not urgent and I think this situation sounds like it needs to get a solution sooner rather than later.
The thing is at the age of 17 she would still be under Paediatrics and she is not yet an adult and so they should not be treating her as an adult. Legally she is still a child. I work in paediatric pharmacy and we still have patients 20 odd years of age that we treat as we realise that popping them off to adult medicine is not necessarily right for the patient, not that I think this may be the case with your daughter but she is still not 18 yet and should be treated as such. Please make that phone call. You never know what may come of it!
Click to expand...
Leo,
Thank you, I will. X
 
Excellent, thank you Leo, it's so good to see and hear good voluntary advice. And Meeshy, I wish you and your daughter best wishes, especially at this early stage of living with diabetes.
- from a type 1 since 91'
 
Sorry to hear that Meeshy, your daughter is obviously very upset and probably feels isolated perhaps a social worker can help? Maybe a group with other diabetics would help the CAB might be able to help.
 
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